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Tiffany`s Twenty Terrific Tips for TC

24

Comments

  • tshire
    tshire Member Posts: 54
    edited July 2016

    Hi Meow! I used Penguin and highly recommend them!!

  • HokieChic
    HokieChic Member Posts: 1
    edited August 2016

    Did you ever deal with headaches? If so, what did you take for them?

  • meow0369
    meow0369 Member Posts: 125
    edited August 2016

    hi all , did anyone get hives from neulasta or stomach pain/ acid ? My nurse didnt want to give me the shot if I got reaction to it but my dr didnt tell me to not to. I kinda want it bc I hve 3 kids going back to school next week and I dont want to get sick. I also have a friend that got sent to ER w 105 tempt when she didnt get hers. Any advice?

  • Erdie
    Erdie Member Posts: 10
    edited August 2016

    Meow0369 Ive been getting hives. Got em day 5 of first infusion on my chest and day 9 of second on face. My nurse practitioner told me it was probably from neulasta and would probably get worse with no remedy. Ive been taking claritin everyday and sometimes benadryl at night when they seem to be worse. I use baking soda and water paste a couple of times a day to heal the hives and I made an aloe very witch hazel spritz to deal with itching.

    I used this recipe but just bought ingredients at local drugstore have same ingredients as the fancy stuff she posted: http://pinsandprocrastination.com/all-natural-aloe...


    I dont have stomach acid but some diarrhea days 5-10. this cook book is great--the ginger meatball soup got me through. https://www.amazon.com/gp/product/1587613441/ref=as_li_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=1587613441&linkCode=as2&tag=rebeccakatzco-20&linkId=W3E5N2ESCWSET76J

    http://www.rebeccakatz.com/recipe-box/chicken-vege...


  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited January 2017

    Stephanie, thank you so much for posting these tips. I just completed 4 rounds of TC in October, and had a bilateral at the end of November. This was a recurrence or most likely a new tumor in the same breast. In 2009 I had a lumpectomy, radiation, and Tamoxifen. This time in 2016 I had 4 rounds of TC, a bilateral, and will start hormonal therapy soon. The bilateral was my choice vs removing just the breast with the tumor. I never would have known about cold capping if I had not read this. Your post also reminded me to drink lots of fluids, rinse with salt/baking soda to avoid mouth sores, and exercise even when feeling really crappy. My oncologist also emphasized fluids, exercise and rinsing.

    I kept maybe 40-50% of my hair, and had a few bald spots. Both the surgeon and oncologist were impressed with how much hair I had left, and said I would have been completely bald without cold capping. It is really important that you talk to your oncologist about cold capping. The first clinic would not let me do this and did not seem to know much about it, so I switched clinics. The second clinic knew about it and were very interested in how well it would work, but could not provide any support. There is an FDA approved cold cap, DIGNICAP https://www.dignicap.com/ that the clinic manages, which may or may not be available in your area. It was not available in Idaho. I used chemo cold caps http://chemocoldcaps.com/ . It takes lots of support to do cold capping, you cannot do it by yourself. I wore a cold cap for 1 hour before infusion, throughout infusion, and for about 4-5 hours after infusion. This was a lot of time for any one person to commit to, so friends signed up up for 2 hour shifts. Chemo Cold caps uses dry ice to keep the caps cold and has an agreement with AIRGAS (makes dry ice) for a discount, if there is a distributor in your area. None in Idaho, so I bought retail, check around for prices, it varied by about 60 cents/pound, which adds up at 80 pounds per session. Retail is also unlikely to have pellets, so you have to break up the blocks, easy to do, but another task when you are already stressed out. ( talk to AirGAS, some reps konw all about what you are trying to do, some might not), and may be able to provided more tips about Dry Ice).

    Several companies offer cold caps for chemo therapy, I have no idea if one is better than another. I did redesign the forehead-ear protector. The directions called for using the ever versatile pantiliner for protecting the ears - changing soggy pantiliners sounded uncomfortable so a friend ran out and got some long foam craft. We used the original template, then extended the ends to have flaps for the ears - it worked great.

    Also, ask about ports. I did not like the idea of having to manage a port and was worried that it could be a source for infection. I asked the oncologist if I had to use a port. Only 4 infusions and healthy big veins. She let my try not using one , and it worked great.

  • tshire
    tshire Member Posts: 54
    edited January 2017

    Hi BlueGirl! So glad you got so much out of my tips! Best of luck to you!

  • Precious1
    Precious1 Member Posts: 1
    edited July 2017

    THANK YOU SO MUCH FOR THIS!!

  • sweetp6217
    sweetp6217 Member Posts: 116
    edited July 2017

    Dear TShire, you are amazing! Do I have your permission to print your list? (Copyright laws, etc.).

  • tshire
    tshire Member Posts: 54
    edited July 2017

    Sweetp, Absolutely!

  • tshire
    tshire Member Posts: 54
    edited July 2017

    Ive had some messages from people asking for my cold cap tip list too, so here it is!

    My tips for cold caps would be:

    1. If you dont already, get a scrip for Xanax or Ativan, and take it about 20 minutes before. Makes the whole experience much easier.

    2. Also take 4 tabs ibuprofen about 20 minutes before you put the first cap on.

    3. Get 100 lbs of dry ice instead of the recommended 80. It will help get things to the correct temp.

    4. Have someone there to help you cap. This is really non-negotiable, you cant do it yourself. Watch all the videos and practice beforehand. Timing is of the essence!

    5. Remember- the first cap SUCKS but the pain will pass quickly, usually in about 5-10 minutes. Hold on, its worth it!!

    6. Get an electric blanket and a warm coat or vest. Wear comfy long yoga pants. This helps.

    7. Use PANTYLINERS on your forehead and over your ears. The moleskin they tell you to use is WAY too sticky and pulls out your hair! The pantyliners work just as well for protection, just cut them to fit. You may get weird looks but who will be laughing when you still have your hair??

    8. Wear the caps for 50 minutes during the pre-chemo meds and 4 hours afterwards. Make sure to tell the nurse you need 50 minutes of pre-cooling before she starts the actual infusion.

    9. For shampoo I used this: http://smile.amazon.com/gp/product/B001FGC8NA its super gentle and smells great! But any sulfate-free shampoo will probably be fine.

    10. Gently comb through your hair before you shower to get out loose hairs that might tangle in the shower, pulling out healthy hairs with them.

    11. I used a gentle organic leave-in conditioner by Sea Chi, a wide toothed comb, and a Wet Brush for detangling. Use the Wet Brush sparingly, and hold your hair roots firmly against your scalp when brushing.

    Hope this helps!

    Note: Caps actually helped REDUCE my stress on chemo days. Because I was so focused on the caps, I was too busy to think about the poison going into my body.

    My hair: https://community.breastcancer.org/forum/6/topics/835766?page=2#post_4619272

    More tips: https://community.breastcancer.org/forum/6/topics/836476?page=1#idx_10

  • sunnyjay
    sunnyjay Member Posts: 143
    edited July 2017

    Any advice on mani/pedis? I get gel on my fingers regularly and havent found any details whether gel will hinder nail damage or make it worse? I get regular polish on my toes and from what Ive read regular polish is fine.

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited September 2017

    thank you for the great tips!

  • newinnh
    newinnh Member Posts: 1
    edited December 2017

    Hi - Im new to this group and finished my 4th TC treatment about 4 weeks ago. Start radiation next week. Im wondering if anyone who completed the 4 rounds of TC was still experiencing nausea 4 weeks after the last one? It seems worse this time then any of the previous times and is lasting longer. Any tips are appreciated. (I will check out the queasypops )

  • Neanie44
    Neanie44 Member Posts: 8
    edited December 2017

    Hi newinnh,

    I finished TC treatment about the same time you did and experienced nausea about 2 weeks after. Which was odd for me is that, like you it was worse than before. I kept some crackers and ginger ale close by along with gatorade and that seemed to help. Keep us updated and Hope you feel better soon.

  • Nuna4life
    Nuna4life Member Posts: 2
    edited February 2018

    Thank you for your information. I just finished chemo and was going to use the cold cap however I heard you had to wear it for 7 hours afterwards. I did ice my hands and feet however.

  • moderators
    moderators Posts: 7,657
    edited February 2018

    Hi Nuna4life-

    Congratulations on the end of your chemo! We hope youre feeling well, and hope to see you on the boards.

    The Mods

  • Neanie44
    Neanie44 Member Posts: 8
    edited February 2018

    Nuna4life,

    Congratulations on Ringing that Bell and completing that part of your journey!!! I read about the cold caps, but Id already had my 1st treatment, so theres that. 😞 Hang in there.. You can handle the rest. Will you need RADS? Whats next for you?

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
    edited March 2018

    Hi ladies - just adding my (very early in the game) endorsement - for the hydration overload recommendation.  Im now Day 3 of TC (number 1 of 4), and seem to be doing pretty well - but waterlogged wont begin to describe it.  That said, if it helps anyone else out there - drink, drink, drink!  And I know that the Neulasta is a bear - so far so good for me but I started Claritin the day before, not the day of.  

    Wishing all a great day!

  • Blasi
    Blasi Member Posts: 1
    edited June 2018

    Hi, I hope you are doing good

    I was diagnosed HER2 negative breast cancer stage 1A in November and had a lumpectomy of the R breast in December 2016 a and started chemo in January 2017.

    I wish I had seen your tips before I started treatment.

    I have neuropathy of my L and R fingers and toes and it has been a year since taxol that ended in 6 April 2017 and continued with Herceptin until January 2018. I heard that neuropathy could last up to 2yeras and will go away.

  • moderators
    moderators Posts: 7,657
    edited June 2018

    Hi Blasi, and welcome to Breastcancer.org!

    Were so sorry to hear of your diagnosis, but were really glad you found us! Youre sure to find our Community a great source of information, advice, and support!

    You may be interested in checking out the main Breastcancer.org sites page on Neuropathy for some tips on how to manage this uncomfortable side effect.

    We hope this helps and we look forward to seeing you around the boards!

    --The Mods

  • domzie30218
    domzie30218 Member Posts: 47
    edited June 2018

    Thank you!!! This list is incredibly helpful. I start my first TC infusion on Friday, June 8th and I feel prepared for it because of this!!!

  • Carolapf
    Carolapf Member Posts: 1
    edited June 2018

    This list has been a total life saver after my first round already. I cant thank you enough!

  • fairchild
    fairchild Member Posts: 138
    edited September 2018

    Tshire, thanks for all the tips!

  • BT39
    BT39 Member Posts: 24
    edited September 2018

    Thanks for sharing! How are you feeling now? All the best to you!

  • pebblesv
    pebblesv Member Posts: 486
    edited October 2018

    Tiffany - thank you SO much for posting this! Ive been searching and searching for anyone who managed chemo fairly well, did not lose their hair, etc. as Im pretty sure Im going to have to undergo chemo and while Ill do it, the prospect of it has me so nervous. Im bookmarking this page and might try ALL your tips!

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
    edited October 2018

    Pebbles, lots of us who have gone through TC monitor these sites so please dont hesitate to ask any questions, etc. as you go through the process.  Were all happy to help and share our own experiences!


  • annie60
    annie60 Member Posts: 295
    edited October 2018

    Ive read that painting your nails can help keep them healthy. Anyone have any experience on this?

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
    edited October 2018

    Hi Annie! I had read the same thing, and i used OPI Nail Envy as basecoat and then a darker polish. My nails still started to separate from the nail bed, but I kept them very, very short, never lost any, and they grew back together about 3 months PFC. Toenails are taking a little longer. I also kept the cuticles extra hydrated.


  • pebblesv
    pebblesv Member Posts: 486
    edited October 2018

    @wildcolonialgirl - thank you for your post. I met with the oncologist this past week and while were still waiting for oncotype dx scores, and bone and CT scan results (which is driving me crazy with the wait), it seems pretty likely that chemo would be recommended in my case. The oncologist said based on what hes seen so far, hed be surprised if my oncotype dx came in low, plus the cancer had already spread to my sentinel lymph nodes...

    So Im trying to prep myself for chemotherapy but I am SO concerned and so afraid that I might actually be making the wrong decision to do it. I watched my mother-in-law go through chemo (for lung cancer, so different, but still...) and she ended up in the hospital 3 out of 4 times. I was referenced to a lovely lady who beat breast cancer through chemo but she also ended up in the hospital in the first round. You read articles about some chemo drugs actually causing permanent, not temporary, baldness. Its well known that chemo can cause infertility and my husband and I were just looking into fertility options when this happened. And more...

    I might be only influenced by those who had it tough right now, which is why this thread was such a comfort. Any words from people who have managed chemotherapy / are managing it fairly decently, and tips to minimize side effects, would be so helpful...

  • 2018summersuck
    2018summersuck Member Posts: 21
    edited October 2018

    Hi

    I am using the penguin caps but started shedding 3 weeks after my first treatment. Did you have the same issue? My dr. doesnt believe that the caps work and said I will probably lose all my hair this week! Penguin says that the shedding is normal and that my hair will thin but not need a wig. What was your experience? I am on 4 treatments of TC. Just had my second treatment yesterday.


    Thank you for sharing anything you can!